We are a nonprofit tax exempt 501c3 organization that advocates for children and young adults who have syndromes without a name. We offer support, advice and information on the challenges that families face when there is no diagnosis. We also advocate for changes in the medical community that will benefit undiagnosed individuals.
We advocate for...
- Awareness and recognition by the medical community, educational system, social services, and the general public.
- More dialogue within the medical community with respect to undiagnosed cases.
- Increased continuity of care among and between specialists and primary care physicians.
- Improving the diagnostic process by attempting to participate in/create a database in order to make diagnostic connections.
- Potentially new programs to protect children/families without a diagnosis from "falling through the cracks" and to allow them to access appropriate services.
We provide support to...
- Address the lack of information families have without a diagnosis.
- Offer empathy, understanding and connections to other families.
- Motivate and empower parents and families to advocate for the best heathcare and services for their child.
- We help to address psychosocial concerns such as feelings of isolation, guilt, helplessness, frustration, emotional distress, etc.
In 2001, an email support group and website was created to provide support to families experiencing the uncertainty of an undiagnosed condition, after Amy Clugston experienced the lack of support opportunities available to her relating to her own daughters undiagnosed syndrome. In 2003, a connection was made with Liz Swingwood from Syndromes Without A Name based in the UK and SWAN USA was established. In 2006, SWAN USA became a non-profit tax exempt 501c3 organization.